Daisy's story

butterfly daisy.jpg

Firstly, let me tell you about myself. I am married to my soul mate and long term partner Tony. I am an incredibly sociable person and am lucky enough to have a lot of very good friends and the best family (OK, I am a bit biased!). Therefore it's not surprising much of my spare time is spent socialising but I also enjoy travelling, camping, walking, reading, yoga, cooking and am involved in some voluntary work.

I go to the gym to keep fit but that is largely out of vanity more than enjoyment! Work-wise I am a freelance Market Researcher specialising in 'Sensitive Issues'. Personality-wise I'd probably describe myself as loyal, generous and expressive and I am a bit of a perfectionist. I am also known for being as stubborn as a mule and punctuality has never been my forte!

The reason I wanted to tell you about myself before the lupus is that I'd hate to be defined by it. It has certainly been a significant and incredibly nasty part of my life (sometimes more than others) and it has nearly killed me on more occasion than one and there is no doubt that it is present every day of my life. However, I am determined that, try as it might, I will not let it 'win' by dominating me and by defining who I am. I will keep fighting back, brushing it aside whenever possible and continue to live a rich and fulfilled life, although of course when things get really bad there are moments of weakness and it is incredibly hard.


When I was a small child until my teens I suffered with loads of different allergies with a range of itchy rashes, hives and swollen lips and knuckles. I also discovered I was allergic to the sun (photosensitive). I had loads of tests and intolerance to certain food colourings was identified but the rashes continued and they never got to the bottom of it.

During my teens I suffered with terrible period pain that was so bad it made me sick and also made me feel tired and lethargic. My GP put me on the pill which successfully got rid of the pain and sickness but the fatigue still persisted and was not always related to my periods. I'd describe it as feeling 'unusually' tired because it was a tiredness that was completely disproportionate to what I'd been doing and bore no relation to how much sleep I'd had or how active I had been. I always just tried to fight through it as there seemed to be no obvious explanation because I had a very healthy diet, was active and generally got plenty of sleep.

When I was revising for my GCSEs I started to feel unwell. My glands swelled up, I had a sore throat, I ached and the 'unusual' tiredness kicked-in again. The doctor did various tests and was confused. One of his tests indicated that it was glandular fever (as he'd expected) but the other came back as inconclusive. As he couldn't get to the bottom of it he decided to settle on the glandular fever diagnosis. After this life carried on as usual but from then on swollen glands popping up in 'chains' along my neck and groin and lumps under my arms became fairly commonplace accompanied by extreme tiredness and a general feeling of malaise. Over the years I went to the GP about it a few times. A kind GP at university sent me home to rest for a few weeks when it happened once, and various tests were done but nothing conclusive was ever found. I didn't push it because I'd often start to feel better after a while so I just forgot about it.

After university I started a job that was demanding physically and mentally. It involved a lot of late nights, early mornings and travel. I enjoyed it because it was exciting and I liked my colleagues and I was doing well. I found it tough though but I was not alone in this - all my colleagues did too. So although I was very tired and often (privately) felt a bit 'out of sorts' this was easily explained away by the demands of the job combined with a busy social life at weekends.


I decided to visit the GP when problems with more specific symptoms started to occur. Firstly, I started to notice that my fingers were going 'deathly' white whenever I was cold like they were completely drained of blood, and felt numb and tingly. Then it started happening to my toes. Other people began to notice and comment, at which point I visited my GP. He explained that it is something called 'Reynaud's', a well known phenomenon for which there is no real treatment so he recommended that I just take care to keep warm. I took his advice and thought no more of it.

A few months later I started to feel very achy in my joints. My wrists, fingers and ankles were particularly bad. At first I put it down to insufficient exercise and being too sedentary due to work so I started exercising more. I began to think it was more serious when one day I noticed that I was finding it difficult to reach round to put my seat belt on when I was in the car. I felt like I was an ancient granny not a girl in her early twenties! I thought I must have developed arthritis so I visited the GP again who referred me to a rheumatologist.

The appointment with the rheumatologist was really strange because it had never occurred to me that any of my odd and seemingly random health complaints could in anyway be related. So when he asked questions about whether I'd suffered with mouth ulcers (something I've had a lot of on and off since as far as I can remember), migraines (again, I had had a few), photo-sensitivity and so on, I was surprised that he seemed to know so much about me as he was clearly not referring to past notes.

Some tests were conducted and I went back with Tony to get the results. We were still under the impression that if anything, the problem was arthritis it came as a shock when the consultant diagnosed 'Systemic Lupus Erythematosus'. Neither of us had ever heard of it, nor had our family or friends. Still, after we were referred to a more specialist Consultant who was reassuring. I was prescribed hydroxichloroquine that successfully treated the aches and pains and made a few lifestyle modifications (if only it was Banoffee Pie and not oily fish that was proven to be beneficial for the Lupus patient!). Otherwise, we resumed life as normal with only the usual minor ups and downs to contend with.


The first time Lupus took a serious blow was in December 2003, a terrifying memory for my family. It started with approximately 10 days of temperature, sickness, loss of appetite and headache - the symptoms that I have now learnt mean trouble: the start of a serious flare up. I was eventually taken to hospital where I fell unconscious. For days I was either in a deeply confused state or in a sort of coma. I 'awoke' days later to find myself in the High Dependency Unit of an entirely different hospital. The lupus had caused swelling in my brain. I was told I had been extremely lucky to have not only have survived, but to have survived without any brain damage.

Following this I made some significant life changes that have enabled me to manage the lupus better. I started to work on a freelance basis to enable me to better control the pace of work and to allow me time to be more proactive in looking after my own health. I also made up a 'red', 'amber' and 'green' code to communicate to my friends and family how I am feeling because (frustratingly) lupus can make you look very healthy when inside you are feeling terrible, making it difficult for others to understand. It sometimes just makes me feel 'unwell' in an indefinable way so it is also difficult to express. Green is when all is well. 'Amber' is used to express a warning when I just don't feel right, feel the 'unusual' tiredness or have something like a sudden outbreak of mouth ulcers. In these circumstances I have to stay in and rest, whereas before I'd determinedly push on - I hate missing out on any fun! 'Red' is for a full on flare up.

I recovered from what has regrettably been the most serious 'red' incident yet. Ironically the first 6 months of 2006 were exceptionally joyful and abundant with fun. We had been to Switzerland with friends for a wedding, work was going ok, I'd been on a long weekend to New York with my Mum and best friend Lorna, we'd had a huge party on the Cutty Sark to celebrate my Mum's 60th and most importantly Tony and I got married (sorry to throw in the cheesy cliché but it is true): the best day of my life! We had more nice things planned for later in the year, not least our honeymoon.

Unfortunately in July I started to feel really unwell. Along with the fatigue I developed a constant headache and a heavy, lonely relentless depression. We knew things were bad when I lost my sociability and didn't feel like speaking to my friends - entirely out of character. I went to hospital when the temperature, butterfly rash and sickness started and underwent the usual series of lumber punctures, MRI scans and blood tests. My steroid dose was increased to 60mg and after four days went home. But nothing changed and the headache and lethargy remained.

My Mum decided to take me back to hospital in September when I complained that everything around me had started to feel 'distant' and 'patchy', kind of like I was dreaming. Apparently, it was when I was in the A&E waiting room that I started fitting. When I woke it was two weeks later and I was in Intensive Care. The diagnosis was neuropsychiatric SLE with tonic-clonic seizures. My treatment has been full-on including chemotherapy, methoprednisolone and other medications all of which have side-effects of their own with which it is necessary to contend. 


I am hugely lucky and thankful that there has been no lasting damage to my brain and am really relieved to have established an excellent team of medical professionals who have been brilliant. Our lives have resumed much normality and I am hoping to get back to work soon. It has been dramatic and incredibly difficult for us all but we keep reminding ourselves of the old adage that 'what doesn't kill us makes us stronger'.

Ultimately, I suppose the worst thing I find about lupus is how lonely it sometimes makes me feel even though I am surrounded by wonderful people. Lupus is a difficult thing to describe and it is often not physically visible so it's easy for others to forget, especially those who haven't been there during the worst times. All this aside, I have successfully managed to work around it and to adapt life to make it possible to keep living the life I want. This has also been possible because my family, friends and colleagues have been so supportive and kind.

So, what can I say? It is all part of the great tapestry of life.